The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
Seventeen days till World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis, because it is still too often people with AE go undiagnosed or misdiagnosed. The AE Alliance has created an infographic to make it easy to spread AE awareness. You can print it and hand it out to your friends, neighbors and coworkers. …
It has become apparent over the course of time in studies of autoimmune encephalitis that unfortunately some patients go on to develop epilepsy. It is a minority, but occurs in a significant percentage of patients. A new publication just out from two centers in Rome, Italy reported results from a retrospective study conducted on adult …
Just a reminder to let you know that the AE Family weekend is coming up in about four weeks on March 2 in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. HAVE FUN AND GET ACTIVE with our annual …
Late last year a systematic review of AE syndromes, diagnosis, and treatment was published in Frontiers in Neurology by two physicians in Austria, and reviewed by physicians in Australia and the US (Mayo Clinic). We felt it may be useful as an up-to-date reference. Once again, the importance of early recognition of AE with prompt …
A group of physicians from Germany have recently published an article in Seminars in Immunopathology, noting significant differences in the incidence of autoimmune diseases of the central nervous system in males versus females. They stated diseases such as multiple sclerosis, neuromyelitis optica and autoimmune encephalitis are more likely to be found in females. Some examples …
World Encephalitis Day is the global awareness day for people who have been directly or indirectly affected by encephalitis. Founded by The Encephalitis Society in the UK in 2014, it is held on February 22 each year and has reached over 80 million people in the past five years. The color associated with this day …
Every month the Transverse Myelitis Association holds a podcast on a topic that affects those with rare neuro-immune disorders. Experts in the field share the latest knowledge and answer questions from their community. On Thursday January 17th the podcast will cover Autoimmune Encephalitis and other rare autoimmune disorders. The Experts for this session are Dr. Michael Bradshaw …
Researchers at Johns Hopkins University published a retrospective study in which they examined the PET scans of patients who had been definitively diagnosed with autoimmune encephalitis over a ten-year period. They compared patients with anti-NMDA receptor encephalitis with other subgroups. They found those with anti-NMDAr AE consistently showed abnormalities in the form of hypometabolism (lower …
You are invited to join us on March 2, 2019 for the AE Family Weekend in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. Meet with experts in the field of Autoimmune Encephalitis. There is plenty of time …
In the past few weeks we have had some amazing people raise awareness for Autoimmune Encephalitis and raise funds for the AE Alliance, so we can continue to invest in research and improve clinical care. Let’s start in New York City. A friend of one of NYU’s hockey players got diagnosed in the spring with …
